healthmedicinet

Although there are many potential advantages to mental health monitoring tools, they also raise questions of power, which is why those who have actually experienced mental illness have informed researchers at Flinders University that they would like to have a bigger say in how these technologies are created.nn

This is a touchy and stigmatized subject, according to Associate Professor Niranjan Bidargaddi from the College of Medicine and Public Health at Flinders University’s Digital Health Research Lab.nn

In a first for Australia, the research reveals that many people who have lived with mental illness have felt traumatized by instances of power imbalance, including possible feelings of shame and disempowerment.nn

Over a two-year consultation focusing on how to redesign mental health service processes with monitoring technologies, participants of the Flinders University Digital Health Research Lab’s Consumer and Carer Advisory Group identified broad problems in areas of agency, access, interactions with health systems, medication management and self-monitoring. The research, “In-Depth Co-Design of Mental Health Monitoring Technologies by People with Lived Experience,” is published by Future Internet.n

“Monitoring is an integral part of taking care in mental health,” explains Associate Professor Niranjan Bidargaddi. “The rate of relapse in the first five years following initial treatment can be as high as 80%, yet the more that people’s mental health deteriorates with each relapse the harder it is to recover. Early treatment and intervention are critical.”n

However, during an in-depth, multi-year consultation co-design study of mental health monitoring technologies, the researchers found that consumers whose life is mostly lived indoors will readily ignore prompts that overwhelmingly focus on the benefits of outdoor exercise, or will fail to understand the crucial support that caregivers offer.n

One participant in the research admitted: “Yes, I make my own medication adjustments? this really enables me to minimize my medication and minimize the side effects.”n

Another of the research participants told them: “The actual range of side effects has never been discussed with me on any drug that I’ve had.”n

Furthermore, numerous mental health apps have failed due to a lack of co-design consultation. Problem areas include low usability, engagement, knowledge and the need for more training/support.n

“Our findings underline the importance of co-design in this context, and the consumer’s motivation to feel respected and empowered to regain a sense of well-being during their recovery process,” says research co-author Bronwin Patrickson, from Flinders University’s Digital Health Research Lab.n

“They want to feel rehumanized and shift the focus towards recovery. The often-undervalued but essential contributions that informal caregivers such as family members can also influence consumer recovery as well.”n

Problems identified by the researchers included smartphone ownership being funded by the NDIS but not the data plans that enable those phones to be used.n

Priority sites for app design intervention include the strengthening of social and interpersonal support, on the proviso that these personal and social connections are balanced by strong consent procedures and boundary-setting.n

“Incorporating in-depth knowledge of the lived experience of mental illness and the broader contexts of mental health care through consumer and caregiver co-design is strongly recommended,” says Patrickson.n

The researchers say that while these findings are of interest for the health care professionals, digital health designers and policy makers.